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Old Fri Jan 9, 2015, 11:34 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Julie,

I am sorry to hear of your husband's condition. The two of you have a difficult decision to make regarding treatment and the impact on quality of life. You are correct in stating that research on dacogen after vidaza failure has not proven very effective. There have been cases where it has helped, but it is not common. There are a couple of people that have taken reduced doses of dacogen over longer periods of time with some success, and this might be an option to discuss with the doctor. Also, there are clinical trials depending on the sub-type of MDS and other health factors that may be available.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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